Ostroglazov family lives in the suburbs of Odessa and bringing up three children, two of whom – with down syndrome. As parents decided on a third and what future they plan for their special kids says Lydia Ostroglazov.
Lydia with sons
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About the diagnosis the doctors told mother-in-law…
Vlad was born when Lydia was 22, and Alexander – 23. Tests, screenings showed everything in order. Like times during pregnancy Lydia was finishing the last year of Kharkiv national University of internal Affairs.
– I am on the first ultrasound screening at 12 weeks was asked about the collar area, I was told that there are no problems, – says Lydia.
In the hospital of a small village in Odessa region – the homeland of her husband, the doctors immediately suspected that a newborn baby has down syndrome, and… told this to the grandmother, the mother of Alexander. Grandmother, hoping that this is just the fault of doctors who said nothing to anyone. So the truth parents found out when the baby was a month and a half.
– For me it remained a mystery why the doctors told mother-in-law, whispering among themselves and not told us parents.
Came to the pediatrician, which usually comes to newborns, looked kid: “we Need to go to the hospital to check on the baby”, and again without explanation, that and why to check. And only on this “test” parents for the first time in relation to their son heard the phrase “down syndrome”.
I didn’t know how to react. When we were in College, down syndrome generally held in psychology of deviant behavior. So representation about a syndrome I had relevant.
My husband was against it, to draw Vlad disability. Not in the sense that it did not accept the diagnosis, he thought – why apply for this disability, to collect the papers and stuff, if he is willing to give the child all that is required.
Vlad the special problems of father and mother does not deliver. Because the specialists were not around, and the Internet Lydia appeared only a year after the birth of a baby, she dealt with him as do with normolipidemic children, as I write in various books about child development.
– Perhaps something is required usedonlonger efforts, but because of the experience of working with such young children I had, I didn’t realize the great effort made or not. Now, when I have a Nazar, I understand that if I spent much more effort than it is now with the youngest, Nazar.
Difficulty developing Vlad began in a time when children should receive it. And now, despite all efforts, Vlad says is bad, and if parents understand it, then other people very often, no.
Lydia didn’t hide the baby, took it everywhere with me, in kindergarten, he went the most common in the normal group.
– We were very lucky with the teachers. When we lived in Odessa – we gradually moved closer to the boy there were more opportunities for development – I called a woman who worked as a cook the boy in the garden. She said that Vlad very much in the garden he loved and even the cooks went in the morning to say Hello to him, to hug and to hold on the handles. And then when we moved, Vlad got into a good kindergarten. But between these two gardens were very fashionable kindergarten, with whom I have associated a negative experience, but there long we did not last. In General, Vlad remembers all the children and caregivers.
The second time the doctors were afraid that I’ll sue them to court
The second son, Makar, born six years after his older brother. Again, the screening showed that all is well.
Genetics wanted to poison me on amniocentesis – taking of amniotic fluid, but I had kidney problems and the doctor refused to authorize the procedure. To be honest, I didn’t know what an amniocentesis is, in principle, necessary.
And my husband later said that if it weren’t for Vlad, he would have thought about me to do such a procedure or not. But he knows what is down syndrome, he has a child so he does not see any sense to do an amniocentesis. Dad loves his boys.
In order to understand the second son also has down syndrome, and Lydia didn’t need doctors.
– Where-that a week before the birth I had a dream that I was very good and gave birth to a boy, and this boy looks at me and says, “Mom, I’m the same as Vlad”.
I did not attach any importance, I think that’s all my subconscious fears. When I had looked and immediately thought, “You’re just like Vlad”. I told my husband. He said, “same means same”. I think that internally he was still very worried, but tried not to show it, tried to support me.
Some time after childbirth in the ward the baby was examined by the experts. First neonatologist in a rather rude manner began to formulate their guesses, so much so that Lydia had to interrupt her: “I know what down’s syndrome, I have oldest child syndrome, so I will ask you to keep your emotions to yourself.” After this, Lydia spoke a different neonatologist. Then the genetics counseling…
After discharge, the parents went with Makar in the genetic center to put on record, to be tested, confirming and explaining the diagnosis. In the center of Lidia was observed during pregnancy.
The doctors were in shock. They quickly ran to find and explore my card because they are worried that I will be on them to sue.
Although to sue for the fact that they came to light, another favorite son, Ostroglazov not exactly planned. Two weeks later came the result of the analysis – Yes, Makar down syndrome is the mosaic type.
Online sources says that the mosaic form is much easier that these children are practically indistinguishable from the normal children. A geneticist told us that her experience shows no difference in the forms of down syndrome not. It happens that children who have a mosaic form, develop worse. On personal experience we are convinced of the rightness of her words – Makar a lot of health problems, and it develops worse than big brother.
When Makar was a month and a half, he underwent emergency heart surgery.
A small hole 2 mm hole, ventricular septal defect. In the hospital said nothing to worry about. But, apparently, they had an old ultrasound machine and they could not see…
At home the kid began to choke began shortness of breath, and in the hospital it turned out that the hole is 10 millimeters. He started pulmonary hypertension, and in half a month urgently operated. After surgery Makar had complications and pneumonia started, it long stayed in the intensive care unit. So, we went to the hospital 1.5 months, and went to a 4.5 in the winter lay down and almost came from the hospital.
Lydia admits that about down syndrome in the second baby, she wasn’t worried, because it simply didn’t have time. Was afraid maybe to lose a son when he was in intensive care.
Makar develops not as good as Vlad. He’s three and a half years, but he still can not learn to potty. In regular kindergarten Lydia, too, has not yet decided to give it away: the boy is constantly sick colds and viral diseases. So while a 4.5 – hour correctional center.
Some oblique views in the street Lydia not to notice, but admits that they are: people are not very used to the “Sunny children”. Frustrating at times when relatives start to regret that it happened so. Lydia just doesn’t understand why she should be sorry and what is the reason for pity:
– I am very comfortable and happy to live. Only, sometimes it seems that I something nedodaeva, give less to children, can be even more. But, on the other hand, look at them: they are all good, they feel happy.
Nobody asked: “you already Have two special – why the third?”
Junior, Nazar – a year and eleven. When 12 weeks of pregnancy Lydia was doing the screening, the ultrasound the doctor could not find the nasal bone, then it still found, but said that it is very small and it’s bad. Nazar was born normodipine, nose that, as expected for such a baby.
– No one told me: “you already Have two special child. Why do you third child?” Our neurologist was sure that we specifically decided to get pregnant and have a baby to Makar behind him stretched and better developed – that is, supported us. Again, I was observed by geneticists. Geneticist is very good, perfect was to me, and even after the first screening were not sent for amniocentesis.
Now Nazar drives brothers to different classes. Mom, of course, being in a child’s car seat. In the morning dad takes the boy to school, Lydia at home with younger, doing something on the farm. Then together pick up the older from school in the afternoon, the correctional center at Vlad and Makar – for 4.5 hours. Work with the speech pathologist, speech therapist, neuropsychologist, lessons logaritmica. Sometimes, group classes, sometimes individual. Twice Lydia carries all in the pool. During the academic year at Vlad for Saturdays drawing.
Dad on weekdays at work, so Sunday is completely “daddy’s day”. He dedicates his sons, games, and activities with them.
– Vlad the elder, says Lydia. – He’s very good-natured, affectionate, brothers loved very much, all the time hugs, kisses, tries to nurse does not allow them to blame. They are naughty, and he says: “you can’t blame them, they are good”. Just a real older brother. Makarchik more like a cat that walks by himself, very peculiar in its Wake. They Nazar play together, complain to each other.
Hobby Lydia to distraction – baking, baskasina and gluten-free. Before knitting, but now, when I used to live in constant motion, repetitive work is not comforting, but rather annoying.
Of course, Lydia is thinking about the future of their sons.
– In the future there are plans for the supported living and employment of special children. In Kiev, there are some programs that help some children with Tutors even go to work in supermarkets for packing.
Even in Kiev there is a pilot project the “Perspective-24”, class in which a special program attended by children with down syndrome. This project launched mom “solar” children, and in the future they plan to keep these kids employed and lived independently. They undergo training at the hotel, now opened a bakery, which later the children will also be able to work.
I would like something similar to do in Odessa, but has no time – with Nazar Makarov is very small. I hope the children grow up and go to the garden, and I have more free time. Moreover, we also have a parent organization, and many believe that our children should be the future, not much dependent on us, parents.